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When RD treatment gets scary

[Editor’s Note:This post was first published recently on the excellent RheumatoidArthritis.net website. You can read it, and many other posts by myself and an incredibly informed tribe of RD bloggers/writers by clicking right here. Thanks!]

Discovering that you have rheumatoid disease is a life-changer. First, isn’t all this weird joint pain something that only old people have to deal with? Arthritis—sheesh! Break out the stinky deep-heat ointment and grab a cane!

An RD diagnosis and all that it means

If you’re a young or young-ish person, say in your 20s or 30s (I was 31 at diagnosis), the news that you have arthritis is a real shock. Learning that it can distort your joints to the point of disability over time is frightening and sobering.

Discovering that this particular type of arthritis may adversely affect other parts of your body—your heart, lungs, or vascular system, for instance, is also scary. And that there is no cure for RD—yet!—is terrifying.

RD treatments can be scary too?

All that’s enough fright for anyone, right? But wait, there’s more. Now add to all of the above the fact that the drugs that treat RD sometimes cause unpleasant or even, well, nightmarish side-effects. Even … cancer.

Whoa! Flood the moat! Pull up the drawbridge! Bar the doors!

There’s no point in pretending that the powerful drugs we use to slow or stop the progression of this disease aren’t potentially dangerous. They are. But here’s the thing: the danger they may pose is very, very small. It varies from dose to dose, from person to person, and from case of RD to case of RD.

My own rheumatologist, when I shrank from the long list of scary-sounding side-effects of the first drug he prescribed, reminded me that without treatment, I could expect the disease itself to be plenty scary enough. Untreated RD can attack not only the synovial joints, causing severe pain and disability, but the linings of the heart, lungs, and veins, causing terrible, disabling illness and even death. RD can affect the eyes, causing vision loss or blindness, as well.

Risk posed by RD treatments is small

Taking the drug with its very small side-effect percentages seemed more worth the risk after I thought about it. And when I considered the fact that almost none of the side-effects were life-threatening, debilitating, or disabling, taking it seems like a no-brainer. So I did.

It turned out that I did suffer some side-effects from the drug—the more common ones of fatigue and malaise. Since they didn’t fade away, we decided to discontinue the drug and try something else. It worked.

I’ve experienced a few side-effects since then. For instance, I’ve slowly lost (and regrown), over a long period of time, nearly a whole head of hair. The new hair came back in curly, where it had once been straight, and brown, where it had once been blonde. Neither change bothers me. I’ve always wanted curly hair, after all. And I’m not sorry that no one ever mentions “blonde moments” around me anymore.

Now, if I make a mistake, it’s just that. I like it.

I’m not saying you shouldn’t be cautious and learn everything you can about the drug or drugs you take for your RD. You should. I take three traditional DMARDs, an injectable biologic, and an NSAID, myself, and believe me, I googled. And googled. And I think that it’s because of these drugs that I’m still able to type, to walk, and to live a relatively normal life. I don’t like to think about how things might be without them.

Now, it’s true that some of the drugs used for RD may cause various cancers in tiny percentages of patients. But there is some good news on that front. A recent study of RD patients showed that treatment with methotrexate and TNFi (TNF inhibiting biologic medications) didn’t increase their chances of contracting malignant lymphoma.1

Another recent study showed no increased risk of melanoma among RD patients taking a considerably long list of the RD drugs, including TNFi’s.2

Not being so afraid of the Big C is a relief. Knowing that my RD is under as much control as I can manage is a relief, too.

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4 thoughts on “When RD treatment gets scary”

Actually for me after reading one of the labels I said I would never use it. Today I blissfully use it and it is the second best biologic I have used. So many times I have wondered, where would I be if I had broken down and started erlier? I might have been in far better shape.

Great post Wren – I don’t KNOW that taking the drugs right from early on has kept my RA where it should be – mild and under control, but I think it’s likely! Yes, I’ve had some minor side effects too but far better than having severe RA symptoms! And I LOVE your new header picture, by the way! 🙂

Hi Wren, I recently discovered your blog and really appreciate your transparency and how you express yourself so honestly. I have been learning how to cure my RA through the Paddison Program and was wondering if you have heard of it. It’s a great alternative to all the drugs that just suppress the symptoms and do not address the underlying cause. A good place to start is by going to Clint Paddison’s webpage and listening to his Ted talk. I’ve been following his program for a year now and it’s changed my life for the better. http://www.paddisonprogram.com/ Thanks for all your art and articles! -Eve